This topic contains 5 replies, has 4 voices, and was last updated by Athene 2 months ago. This post has been viewed 132 times
- March 8, 2019 at 4:59 pm #9385
I have had sleep issues such as sleep paralysis and hypnagogic hallucinations for just over 7 years after my last c section.
However over the last few months I have been experiencing a whole host of symptoms and my sleep paralysis has changed into what just feels like paralysis!
I have fragmented sleep always. I have excessive day time tiredness where I feel heavy and just plain awful and at times foggy, this is most days. I have poor short term memory and at times double of shaking vision during the day. I have hypnagogic hallucinations every night of faces and cars (before I go to sleep). The sleep paralysis has changed from in the middle of the night to when I fall asleep, can happen several times a night and now without the nightmares and instead full awareness of my surroundings, sounds, can feel my body but not move, electrical surge feelings and a hideous electrical hum sound in my head.
This morning I was watching tv, went to turn the TV down, realised it wasn’t turning down and that I had actually somehow slipped into a paralysis state with all the usual feels and noises of sleep paralysis, as well as total awareness of my surroundings, sounds etc. BUT instead of getting myself out of it after a few minutes I was paralysed like this for an entire hour listening to the TV trying to calm myself down! Last week I had ‘sleep paralysis’, got out of it, opened my eyes, moved and called for my daughter (14) to ‘come here’ as I wasn’t feeling right at all, only for my body to slip back into paralysis. I could hear her moving about in her room and I was wishing her to come help me. A few minutes after I pulled myself out of it again and got up!
The hour long paralysis has never happened before. I have never made my sleep problems an issue but I think it is clearly something very wrong! So I managed to get a DR appointment today over the phone, the Dr didn’t even know what sleep paralysis was and told me there was no such thing as sleep specialists/study etc in the UK (where I am) and told me it sounded like I had a mental illness!! 100% I don’t.
Someone please help me, how do I get someone to listen when sleep disorders clearly aren’t that recognised. Am I alone in this or was I just unlucky with the Dr that I had today!? Does it sound like narcolepsy, I don’t have cataplexy or automatic behaviours but literally tick all the boxes for everything else.
I am scared to sleep after this morning but am SO tired! Please someone help me!?
Thank you for taking the time to read this!! I know its a little long and I would of introduced myself first but I’m just fretting right now!March 8, 2019 at 7:23 pm #9387
I am so sorry you are going through this. When those things first start happening, they are terrifying. Your Doctor sounds like a real piece of work. Do you have access to another or are you stuck with him? What’s his age and where are you located? He needs educating… BIG TIME! And you do NOT have a mental illness but if necessary you could calmly ask for a referral to a Neurologist…a Neurologist who specializes in sleep medicine.
Best of luck!March 8, 2019 at 10:19 pm #9389
Hi, sorry to hear of your difficulties. I am not sure how things work in the UK but you need a physician experienced in dealing with sleep disorders, either a sleep specialist or neurologist preferably.
If you could tell us where you are located in UK perhaps we could suggest someone who is more familiar with your particular problem.
All my bestMarch 9, 2019 at 2:41 am #9394
Hi Ferret and Natdoc, thank you so much for replying 🙂
I live in Kent in the UK. Going to make another appointment on Monday with another DR and take in information this time to show I have some kind of sleep disorder and not be totally fobbed off again! I asked to be referred to some kind of sleep specialist and he asked me who I could be referred to when there is no such thing! I think he would of laughed at me for even suggesting a neurologist! Don’t know how old he was as it was over the phone.
I am valid in going right, makes me feel like my sysmptoms are not as bigger a deal to the outside world, which could be easily done given it is me going through them, things are always a bigger deal for the person?
Hope you guys are ok, I take it you guys live in America? So jealous!! Thank you again for your replies.
SarShe xxMarch 9, 2019 at 11:53 am #9398
You are most certainly valid in requesting further evaluation, unfortunately at times we have to insist on being taken care of rather than pushed aside. Sound like your GP could use a little education. How the hell do you get diagnosed with anything over the phone? or misdiagnosed shall I say.
At any rate I have included 2 places that I am aware of that diagnose and treat narcolepsy, I am not sure how far away this is for you but I wish you all the best. Please keep us informed of your progress.
Edinburgh Sleep Centre
13 Heriot Row
Tel: 0131 524 9730
Dr Peter J H Venn
QVH Sleep Disorder Centre
Queen Victoria Hospital
Tel: 01342 305420March 19, 2019 at 11:03 am #9516
Are you able to see another GP at your practice? I know at my local surgery there are some GPs I love who are very knowledgeable and informed, and there are some GPs I avoid like the plague as they’re dismissive of any symptom that’s not essentially “I’m dying right now.” I’ve usually had no problem seeing any GP at my practice, not necessarily my named one.
There are most definitely sleep specialists in the UK. It’s just unfortunate that GPs are most often the gatekeepers for referrals. 🙁
Does your local hospital have a sleep department? If so, can you speak to PALS about how to get a referral in face of a reluctant GP? I’m assuming being in Kent, you’re a bit removed from the catchment area of Guy’s and St. Thomas’? Narcolepsy UK might also be able to help find a specialist?
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